Naples baby fighting rare congenital heart defect comes home

Melody Teague and Dean Ramos pose for a portrait with their children, Uriah, 7, left, Harper, 5, right, and Rhythm, at Bean to Cup Coffee Lounge on Bayshore Drive in Naples on Monday, May 13, 2019. Rhythm was born with a congenital heart disorder, and at only 1 month old she has already undergone one heart surgery and is scheduled for two more by the time she is a toddler.(Photo: Alex Driehaus/Naples Daily News USA TODAY NETWORK - FLORIDA)

Dean Ramos looked up when he heard a medical helicopter in the night sky.

A 20-year veteran deputy of the Collier County Sheriff’s Office, he stopped dead in his tracks in the parking lot of NCH North Naples Hospital.

He was transfixed by the fading blinking lights as the helicopter swept away.

This was different. And he was powerless.

The helicopter carried his wife, Melody Teague, 27, and their newborn daughter, Rhythm. She was born 18 days earlier on April 5.

“That is when I lost it,” Ramos, 51, said. “This is my family. It was just really challenging to see them fly over me.”

The helicopter was bound for Nicklaus Children’s Hospital in Miami. Hours earlier, the couple learned Rhythm was born with a congenital heart defect. She needed specialists at the children’s hospital.

They wouldn’t get the precise diagnosis, hypoplastic left heart syndrome, until the next day.

Melody Teague kisses her daughter, Rhythm, at Bean to Cup Coffee Lounge on Bayshore Drive in East Naples on Monday, May 13, 2019. Teague is the owner and operator of Bean to Cup, and her neighbors in the Bayshore Arts District have started a GoFundMe to help with the family's expenses. (Photo: Alex Driehaus/Naples Daily News USA TODAY NETWORK - FLORIDA)

Hypoplastic left heart syndrome is a rare condition where the left side of the heart is critically underdeveloped. As a result, the left side of her heart is unable to pump blood to the body as it should. Without intervention, the rare heart defect is fatal.

“It was touch-and-go,” Ramos said. “She needed immediate surgery.”

Ramos couldn’t follow the helicopter. The couple has two young boys at home who were being watched by a friend.

It became the first of many nights not knowing whether Rhythm would pull through.

While his wife stayed at the hospital in Miami, Ramos took care of their sons, Uriah, 7, and Harper, 5, at home.

The diagnosis

During a checkup April 23, the baby’s pediatrician noticed Rhythm's lips were faintly blue.

The doctor told Teague to take Rhythm right away to the emergency room at NCH North Naples.

“I was shocked honestly,” she said.

There was a series of tests, and a team from Nicklaus came by helicopter to the Naples hospital.

“I got up to the hospital and they told me (my) daughter is critically ill,” Dean Ramos said. “Her blood pressure and heart rhythm and oxygen tanked. She was starting to deteriorate.”

After she was transferred to Nicklaus, the specialists confirmed their suspicions and the diagnosis.

Melody Teague holds her daughter, Rhythm, at Bean to Cup Coffee Lounge on Bayshore Drive in East Naples on Monday, May 13, 2019. Rhythm will undergo another heart surgery when she is 11 pounds. Another will be necessary when she is a toddler.(Photo: Alex Driehaus/Naples Daily News USA TODAY NETWORK - FLORIDA)

The family has a detailed book of instructions for what they need to monitor with the baby and how to do her medications.

Initially it was a little overwhelming not having a medical team in charge, Dean Ramos said.

“It’s like being a new parent again,” he said.

The baby will need more surgeries, with the next one in the fall after she gets stronger. Already she’s put on weight in the week she’s been home.

“Every day you fall in love with her again,” he said.

Dance to the Rhythm

The fundraiser is set for Saturday, May 18, from 5 p.m. to 9 p.m. at The Gardenia House, 3200 Bayshore Drive. There will be activities for children, food and entertainment, and raffle prizes for adults.